Back Again...ANOTHER EEG

When we followed up with Vlcek after Riley was discharged from the PICU for the second time, about a month ago, I knew that another (many more I’m sure) EEG was in his near future, let alone what other tests/procedures we come up with that may need to be done. When we met with him shortly before Halloween and he said that we were going to increase one of his antiseizures, and decrease the most recent one (to slowly take him off it), we talked about how Riley would need another EEG sometime soon to get an idea if adjusting those meds was making a difference compared to how his last (week long) EEG looked. Up until yesterday, it was no big deal. Then the day prior to coming in, it was reality again of having to come back to the hospital, of continuing to poke and prod to try and find some answers. And I’m just starting to dread that, and getting tired of it. But the fact that it’s almost been a year since we started on this journey with the monkey, I think I’m allowed to feel that.

It’s hard to imagine that on the 17^th, it will have been a year since we met with Vlcek for the first time, and it became even more apparent that there is something going on, that Riley has some sort of neurological/neuromuscular disorder. It’s certainly been a very long year, but has also flown by so incredibly fast, it’s insane. Started out with his first MRI, which was clean. He started PT once a week at the beginning of the year, and slowly made great improvements and strides in both his strength and movement. Then went on to do a muscle biopsy in March, which showed Type 1 Fiber Disproportion. Ok, great…but that could still just lead us in many different directions, it’s not a diagnosis. Then in April, he started getting the Infantile Spasms and that became the focus of controlling those with meds. This started our many of EEGs, a summer of a big steroid that completely wiped out all his work in PT, and put his muscles back at square one. Next, he suddenly started having swallowing issues in July, which quickly led to a NG feeding tube, followed not long by landing in the PICU for the first time with pneumonia. Then the ND tube came, along with issues contributed to the pneumonia (grand mal seizures, harder breathing, O2 drops, etc etc). Got to go home for a total of 10 days, with more medical equipment accumulated than we would ever want, and came right back due to still the swallowing control of his own secretions, since he still had the ND tube. That PICU stay was almost as long as the first, where he had his GI surgery, weeklong EEG, new antiseizure med, and a much bigger boy. Being home a little over a month has been amazing, and I can only hope that we have lots of time like that in the near future, and today’s EEG is a quick visit. We are still waiting on genetic testing results, and after we have those, try and figure out the next step and direction in determining an overall diagnosis. 

Besides sitting here having him go through whatever number EEG we are currently on, most everything else at the moment, he seems to be doing well with. All his feeds and secretion control have been awesome since surgery, and he’ll have a follow up with his GI doc and surgeon early next year to change out his button and set a course as far as how we want to progress with his feeds. Need to determine out of all of his doctors, who’s going to be the one to make the call, when it’s determined safe again to swallow by mouth again, to slowly start working on that, see how it goes, then finally do another swallow study to see what is really going on. Just don’t want to jump the gun on that too too soon, so we don’t risk any aspiration pneumonia, even though he had this esophagus wrapped. My guess we’re looking at around the beginning of the year, when we see them again. He has developed little cysts on each of his eye lids. Can happen from the glands in the area becoming clogged. Other than surgery, which at this point we are not doing, they generally go away on their own, slowly. They have gotten much better, aren’t as big or as swollen any more, and are draining, so hopefully by Christmas he’ll be able to open those peepers better! And not have ever stranger I see comment on how he’s sleeping, when he’s not at all. I’m not getting irritated by that at all…. ;-) Beyond that, it’s just working on adjusting his antiseizure meds, and charting a new course of action for a diagnosis. 

(Right now with the EEG hooked up and his monkey hat to disguise it!)

(Playing around in the toy store after his haircut last Thursday...a little Dennis the Menace!)

Reflecting back on how the past year has gone, Riley is showing awesome signs of an exciting and promising upcoming future. He’s back to doing PT once a week, and is moving constantly, and finding coordination between his limbs, head and core, etc. He actually loves being on his tummy now, and during PT last Wednesday, he shocked us by immediately bring his elbows and arms in, moved his legs in coordination with each other and his arms, and showed signs of trying to push himself up so he could crawl away!! If he just had the strength in his head/neck and core to get the top part of his body off the ground, he would have done it! If he keeps progressing in this way, I think he’ll be trying to army crawl before he has full strength in his core to sit by himself. That’s going to be my goal for him for his second birthday. For holiday time next year, it would be great to see the strength in his core to sit alone and starting to stand or pull himself up to get towards walking. I’ve accepted the fact that he’s not like other kids his own age, and may not be for some time, possibly not walking until he’s 2 or 3 years old. But as long as he can keep himself healthy, and we continue to get closer to a diagnosis to help care for him even more, I’m happy with that. He’s just as stubborn as both his Mommy and Daddy, if not more. You can tell by his facial expressions and noises when he wants to do something by himself, which he just can’t. Thinking about it, that’s usually around when I’m getting punched in the face while carrying him, his frustration coming through in ways that he can show it. 

(Coordination with movement of hands and lifting his legs, and of course rolls over right after!)

(Poppa Sarge and little sarge passed out)

Hopefully we’ll have some good news on his EEG in the morning, and maybe some sort of update on all the genetic stuff we’ve now been waiting two months on…..will try and do a quick update in a few days when I have more info!

"Normalcy" never felt so good

The things you wouldn't think you'd miss and couldn't wait to do again; laundry, the dishes, going through old crap to give to goodwill...feels so good right now. We have been home and back into a "routine" now for almost 2 weeks (tomorrow). Despite a quick urgent care visit (that turned into an ER visit due to R's massive history) this morning, there is not indication of being back in the hospital until at least the end of the month. Let me start from the beginning of returning home and all questions shall be answered.

Finding that routine and becoming comfortable taking care of your kid 24/7 without doctors coming in and out and lots of nurse help, is well, interesting. We both of course know how to, very well and are more than capable, but you still get that slight nervous feeling in the beginning. Like when you bring them home from the hospital for the very first time and that hesitation of unknown. We know a lot when it comes to this kiddo, but each time coming home from the hospital always has something knew to just get use to and find the groove with. This time it was some additional meds, and doing all his feeds through the button in his tummy. The concept isn't any different than the NG or ND tubes, but still something to get in the swing with. 

Riley has been doing awesome at home. He loves being able to put his hands all over his face and not have a feeding tube (or oxygen!) there to yank onto. Finding a normal sleep schedule has been a bit of a challenge because most nights he doesn't want to go to bed until late, then ends up tired the next mornings. For the most part he's out a good chunk of the night, letting us have mostly normal sleep. Just a work in progress as he's getting older and doesn't want to nap much, unless he's just that tired. He's certainly becoming a typical toddler, in his own way. Constantly making noses, wiggling around, starting to spin, slamming his legs, punching me in the face, wanting attention, etc etc. he just can't run away from us yet, or yell no and defy us that way. Doesn't mean he doesn't try! 

First week home was free of doctors, and nice to find our routine and just be home. This last week he had a couple follow up appointments, thankfully nothing big coming from either. He saw a ear/nose/throat doc on Tuesday to make sure there isn't anything structurally that could explain his random O2 drops in the hospital, everything is fine there. Saw Vlcek on Thursday and still no genetic results, basically waiting on those answers to determine the next course of action in a diagnosis. We did go over his week long EEG and how he has some hypsarrethmia coming back. Rather than jumping right into the kinogenic diet, like Simon thought, Vlcek wants to adjust two (of four) dosages of antiseizure meds. So we will give that this month to adjust in his system, then do another EEG and see if that made a difference. Ideally it will, and the diet wouldn't be on the table any more. We will see. Said that his mri did show the abnormalities from the sabril med, going away. But there are new abnormalities that are not from that. Said some of his brain cells aren't projecting the way they should, and that affects brain and nervous system functions. But right now, that's all it tells us. He will need another mri in the future and it will be used to help diagnose him, but that on its own doesn't say what exactly is going on. Let's get as much shit figured out this year before insurance resets!!

Riley had a good time at gram and poppa's as a little wild thing for Halloween. And will continue to enjoy normal family things until returning to the hospital for a PLANNED visit for another EEG at the end of the month sometime. Until then, it's working hard at PT, giving smiles and smooches, and enjoying his own home, and dog! 

Note: the urgent care trip today that turned to er visit was just for his left eye. It's been puffy lately and woke up this morning to it basically swollen shut (he had been laying in a big pile of drool, silly man). Just a bacterial infection that daddy is picking up antibiotics for as mommy works out and blogs.